Only 17% of Medicaid-enrolled children with autism receive genetic testing, despite national guidance recommending these tests be given to all children with the condition or an intellectual disability.

That’s according to a recent study published in Genetics in Medicine, where researchers from the University of California Los Angeles reviewed health records linked to 241,060 children between 7 and 17 who were enrolled in either Medicaid or the Children’s Health Insurance Program from 2008 to 2016.

Children who had a diagnosis of both autism and an intellectual disability were more likely to receive genetic testing, though still at a lower-than-expected rate of 26%. Genetic tests were given to just 13% of children without autism who had only an intellectual disability.

In addition to low testing rates among these eligible children, researchers also found disparities across racial groups. Black children, regardless of their diagnostic condition – either having autism, an intellectual disability or both – were less likely to receive genetic tests at all compared to white children.

Even with the introduction of newer testing modalities in 2014, the study found that there was still low uptake.

“Genetic testing provides crucial information that can end this search for many families, potentially identifying specific diagnoses, informing treatment approaches, and connecting families with appropriate support services,” Dr. Julian Martinez, study co-author and associate professor of human genetics and director of the Autism Genetics Clinic at UCLA, said in a press release. “These findings highlight the urgent need to address systemic barriers that prevent equitable access to these recommended diagnostic tools.”

However, questions around how to make improvements in genetic testing for Medicaid-enrolled children persist due to proposed Medicaid cuts and a new direction of leadership at the Department of Health and Human Services (HHS).

HHS Secretary Robert F. Kennedy Jr. has repeatedly stated there has been too much focus on the genetic causes of autism and not enough research being done on environmental factors like toxins.

During a May 14 Senate committee hearing, the HHS secretary said he did not think the National Institutes of Health (NIH) should be funding genetic research around autism any longer.

Shortly after, the NIH opened applications for the Autism Data Science Initiative, allocating $50 million for projects that advance the “understanding of contributors to autism diagnosis and increases in prevalence of the condition” and identify scalable interventions for it.

The details also specifically encouraged proposals that aim to explore “environmental exposures” as a cause rather than genetic ones.

While this new research points to a “a major gap between what’s recommended and what’s actually happening in clinical practice among children who receive health insurance through Medicaid,” according to the study’s lead author Dr. Tashalee Brown, a post-doctoral fellow in the UCLA National Clinician Scholars Program, it’s unclear where priorities on this may be placed under the new administration.